From Fitbits and electronic health records to insurance claims databases and IBM’s Watson, every day we capture an enormous quantity of health care data. The information that we can glean from this data can help us to manage our own health and fitness habits or recognize larger, population-scale health care trends. With greater access to health data, we can shine some light on what we are doing well, which approaches work better than others, and where there are areas for improvement.
That’s why it was encouraging to hear the Centers for Medicare and Medicaid Services (CMS) recently announce that it would allow “innovators and entrepreneurs to access CMS data, such as Medicare claims” through the CMS Virtual Research Data Center. This change, along with others, would offer researchers and other experts who were previously denied access because of their commercial affiliations the opportunity to review a trove of publicly funded data to help answer challenging health-related questions.
The real-world information is in these databases could benefit patient health in a number of ways. Expert analysis of this data can help clinicians and other providers make better treatment decisions by using predictive analytics to find more effective ways to manage high-risk patients. It also provides the data infrastructure to support emerging delivery system and payment models that seek to improve health and health care and lower costs. Some research questions can only be answered through the use of more granular real-world information. And, having access to the data will help to make health care more transparent for consumers.
The announcement, related to broader health technology initiatives being promoted by U.S. Health and Human Services Secretary Sylvia Burwell, comes at a time when we’re seeing significant changes in our health care system. With these changes, spurred by the Affordable Care Act’s goal of a high-performing, value- and evidence-based health care system, greater alignment of stakeholder incentives is required. Alignment means that stakeholders are incentivized to practice new and different behaviors focused on the quality and the value of the services performed, rather than on the volume of services. Increased data access also means that everyone involved in meeting these goals can be analyzing the same data and utilizing it in a more transparent way to improve care.
The announcement also marks a shift in CMS’s long-standing policy that prohibits the sharing of certain federal program data with entities that have a “commercial purpose.” Today, it is difficult to distinguish which types of research have commercial interests because data can inform much more than just a product or tool. Research often builds on itself, so one key finding may end up leading to other findings. And when it comes to improving patient care, this type of data could help commercial entities like a health system identify the drivers behind readmission rates; help multi-specialty provider groups determine more effective ways to manage patients in accountable care organizations; or help consumer groups in recognizing optimal wellness programs.
The way in which data are being used also has changed dramatically. More granular, patient-level information is needed to achieve the goal of a value-based health system. Within the organizations previously excluded from accessing CMS data, there is deep scientific and analytic expertise that enables a broader understanding and knowledge of public health issues across the entire healthcare ecosystem. It simply doesn’t make sense to block certain experts from contributing to efforts to improve our health care system.
Yet all researchers and innovators, no matter their affiliation, should be subject to the same rules of access for data. Strong criteria exist to provide researchers access to CMS data—these criteria should be applied uniformly to all qualified researchers or entrepreneurs. The research and tools developed through increased access to timely data can help improve healthcare for all patients and consumers.
Developing in parallel to the CMS announcement, the House Energy and Commerce Committee recently approved the 21st Century Cures legislation (HR 6), which includes language to encourage access, sharing and use of health data for research purposes. While CMS’s actions have the most direct and immediate impact in opening up access to information and data, the legislation was no doubt a motivation in getting the agency to move. The legislation also took an important step toward acknowledging the vital role data can play in improving healthcare and the health system.
As we move to a health system that encourages transparency, collaboration across stakeholders and a focus on value rather than volume, data will be the cornerstone to improve care and care delivery. Through broadening access to the real-world information in its databases, CMS took an important step toward meeting those goals.
Dan Leonard is President of the National Pharmaceutical Council.